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My husband is in middle stages of dementia, home with me. No other family/friends to help. He's awaiting spinal surgery for leg weakness and falling. He falls a lot, inside and out. He refuses to allow a respite caregiver so I can go out w/out worrying about him. And no, he won't fall for the "housekeeper" guise or other fiblits. Every time I have to go out (rarely and never more than 2 hrs) he promises to stay inside and watch his re-runs. But today I came home to find out he climbed up on a tall ladder with a machete to trim some oak tree branches. As he was telling me it was no big deal, he tumbled backwards and fell on his back. Thankfully he was on the ground at the time. Another time I came home to find him in a hole he'd dug. He was covered in dirt, dehydrated, calling my name, forgetting that I'd gone to the doctor.


I'm totally burned out/frustrated/exhausted and furious. I don't know how to handle this anymore. I feel myself going cold and hard inside. Like a switch has flipped. I have no more cares to give. I'm not good at the cheery "Hey, let's do this instead of that" approach because he does what he wants regardless. There are days when we still connect as a couple and I think it's not time yet for AL/MC. Other days I fantasize about it.


Is it time? And if so, how in the world do you get someone like him to agree to that? Any advice is appreciated.

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Oh, my. We are living the same lives. I came home one day to find my husband on a ladder with a chain saw! And I am also not a very patient caregiver. This journey is truly, truly hard. The hardest part at this mid-point in dementia is that he is still capable of doing many things for himself. He can fix himself breakfast, watch the news and understand (though not remember a few minutes later), or even use the leaf blower to clean the lawn. However; judgement, logic, balance and memory are declining every day. I, too, am wondering how to make the next step into seeking help a non-combative issue. He thinks he's fine! I've been following this forum now for several months and I do find a kind of kinship here. This is my first post/answer and I am so grateful that I read your question. It makes me feel less alone and that in itself is a help. One thing that I have been working on is doing research into what help will be available when the time is right to engage it. Having some kind of plan in place is also comforting ~ even though I already know nothing will actually go as 'planned'. Stay strong, don't beat yourself up for not living up to some vague definition of standards and know you are not alone. Peace.
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Daughterof1930 Dec 2021
You are wise to be looking into the future options. A good caregiver knows it’s vital to look out for him/herself to be able to adequately help another
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Earthgrammy, which of the emotions you cite (burned out/frustrated/exhausted and furious, not to mention “cold and hard”), do you have more tolerance for? Although others have suggested outside help, I don't agree. If he's already refusing a “housekeeper” or doesn't buy into fiblets, telling him you're going to have someone come in, regardless of what he wants, will be a lose lose situation. Speaking from experience, I tried that with my wife. On one occasion, she physically assaulted the caregiver, and on another, three neighbors were trying to calm her after an episode with the caregiver. Both happened when I was supposedly “Taking a break”. Naturally, I dismissed the agency and tried day care... same result. I think that's where you are now, even though you haven't tried home care or day care,

I visited several facilities with my wife under the guise that we could sell the condo and move into one of these. They were all very attractive and offered all the services we didn't like doing anymore, cooking, cleaning, etc. When the time came, I never discussed it with her. We both went to her room and after a few minutes I said I had to get some groceries and was gone. I'm not saying that would work for you, just relating my experience.

So, I think it's time for a new “home” for your husband. The decision and the transition are not easy, in fact it's harder than hard emotionally, but it's doable.

Call your local Area Agency on Aging and explain your situation. They can be of great help. Their elder helpline for your area is 800-262-2243.

The following link may help you in moving your husband to a care facility. It's extensive but informative.

https://www.seniorlink.com/blog/50-tips-on-transitioning-a-loved-one-to-memory-dementia-or-alzheimers-careyour-blog-post-title-here
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Helenn Dec 2021
Really good advice … I would wait till after surgery .. then rehab ….
look for good memory care … because dementia only goes one way….also he could be falling because of dementia as well !!!
should go directly from rehab to care
and you can say it’s another rehab
facility to help you get well.
best of luck … hardest thing to do !!!!
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I told myself that I would keep my Husband home as long as it was
SAFE for me to care for him and SAFE for him.
I think you have reached a point where it is no longer SAFE for him to remain at home.
I am sure he fully intended to stay in and watch re-runs but with dementia you never know what is going to pop into that brain.

You do not need him to agree to placement.
Yes he will be royally pissed at you.
He will be angry.
he may even say he hates you for doing that to him.
BUT
You are doing this because you want to keep him safe.

In the early process of my Husbands dementia I often said that a "bad day" this month is going to be a "good day" in 2 months. It is like trying to walk up a sand dune, you get so far and you slide back a bit and then you start again.
You have to rejoice when you get a little further but be prepared to back slide.
(The Serenity Prayer became pretty common for me)

Placing someone is a tough decision. Only YOU can tell if it is right for you and your husband. Do not let anyone "guilt" you into doing something you can not do. Placing him in Memory Care is not a "failure" it is admitting that he needs more care than you can safely give him at home.
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Earthgrammy Dec 2021
Thank you, Grandma1954
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I think you need to let go of the idea that he is going to "agree" to anything. With dementia, logic seems to be the first casualty.

Simply tell him that you are hiring someone to help you, for your peace of mind and to cover yourself legally. And because your homeowner's insurance will be cancelled if someone isn't there when you go out.

I would lose the machete.

((((Hugs)))))
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Earthgrammy Dec 2021
The machete might just grow legs and walk away. They do that sometimes. Thanks!
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You are allowing someone without full mental capacity control you.

Figure out what’s best for him and do it. Don’t doubt your decision.

Nothing will get better. You will continue to stress. He will continue on his path of decline.

I hope I have provided you with the kick in the butt you need.

Take care,

Ex-caregiver providing info from hindsight
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Earthgrammy Dec 2021
I consider myself kicked. Thanks.
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It is time. If a person needs 24 hour care, one person cannot really do it--you must sleep, shower, etc. My SIL's FIL (no relation) was being "cared for" by his son 24/7. The son did as well as he could and thought things were OK. Then he got a call from the police. The father had awakened early, dressed and went to the 7-11. Unfortunately, he had put on 2 shirts and no pants! It could have been much worse. After that they placed him in memory care, even though they had really wanted to care for him themselves. There comes a point when 24 hour active supervision is necessary. You simply cannot do that yourself. Nobody can.

It's not your fault, but it is your responsibility to your husband to keep him and others safe from his failing mind. Try to comfort yourself that you have already done all that you possibly can do.
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Earthgrammy Dec 2021
Thank you so much.
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1. Await next crises.
2. Emergency medical treatment plus Geri-Psych review.
3. Springibg POA or Guardianship.
4. Placement into care.

Harsh - but that is the *how*.

Awaiting for him to agree is futile. This is your biggest hurdle. That shift of dynamics.

If reasoning & judgement has dimished for him, reasoning & judgement must come from you.
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Earthgrammy Dec 2021
So true. Thanks
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It would be a good idea for you to start looking into care facilities for when your husband will need placement.
In the meantime, do not give him a choice about homecare services coming in. Do not lie to him about it either.
Speak to him plainly and TELL him that there will be hired aides coming into your home who are there to help you and that they will remain in the home if you go out.
If your husband becomes too much for you and hired help to handle then please put him in a care facility.
Explain to the facility that he will be a hostile transfer. They will help you with it.
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Earthgrammy Dec 2021
Many thanks.
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You have a couple possible paths here.

1) Hire a twice-weekly person at least right away. It's not for hubs, it's for you. You have to go to your doctors, to your grocery store and what have you. For you to take care of him, you have to have this other person, or persons.

2) After he has the surgery, insist on him going to a Medicare rehab for however long they'll cover it. Then line things up about how the doctor thinks he shouldn't go home.
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Earthgrammy Dec 2021
I think #2 is the way we'll be going. Thanks.
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I've read that when someone with dementia is sedated, they may not return to the same level of cognizance that they had before sedation. If your husband has spinal surgery, I am sure that he will be anesthetized, and that there is a pretty strong likelihood of him not being where he was before the surgery. The choice may already be made for you. After surgery, he'll go to rehab. After rehab, you might not be able to care for him at home.

My husband has CHF and other heart issues. Surgery was recommended. After discussing the ramifications of being put under twice (once for the testing, once for the surgery) he decided that he'd rather die from the natural progression of CHF than be the guy in MC for years with a good strong heart.
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Earthgrammy Dec 2021
Food for thought. Thanks.
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